I'm StarkArt, new to this site, hello out there, fellow seizure sufferers. Very happy to have found this forum, hope to learn from your experiences. Does anyone know of anyone who's been involved with the Andrews-Reiter behavioral strategy? I've had complex partial seizures for ten years, and don't have auras, so I don't know how helpful that approach is going to be, but I'm trying to research it by contacting others who may have had experience with it already, compare it to my case. I tried biofeedback for six months, and saw some number success, but it didn't effect the number of seizures I had. My doctors just keep increasing my medications, making me more sleepy and moody, angry all the time. I have VNS, that hasn't helped either. I hope you all have had more success with this condition than I have, it is hard to stay optimistic after ten years, and this new idea is very expensive, so I need to really scope it out before trying another plan. I guess I want to find someone who has had luck with it, and hear from them some of their story, to help me talk myself into taking another leap of faith! Thanks for having this forum, it's great to read your entries.
Behavioral Approach?
- Thread starter starkart
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Status
- Messages
- 7,479
- Reaction score
- 822
- Points
- 278
Hi StarkArt, welcome to the forum. :hello:
Dr. Andrews is a member of the forum and a really nice person. You might try talking to her directly with any questions you have about thier program.
You mentioned that you tried biofeedback. Did you try EEG neurofeedback? It's a specific form of biofeedback that uses EEG measurements of your brain's activity for the feedback loop. It can help normalize brain activity whereas biofeedback using other measurements (heartrate/pulse, breathing, etc.) are only effective in teaching you how to relax.
Dr. Andrews is a member of the forum and a really nice person. You might try talking to her directly with any questions you have about thier program.
You mentioned that you tried biofeedback. Did you try EEG neurofeedback? It's a specific form of biofeedback that uses EEG measurements of your brain's activity for the feedback loop. It can help normalize brain activity whereas biofeedback using other measurements (heartrate/pulse, breathing, etc.) are only effective in teaching you how to relax.
RobinN
Super Mom
- Messages
- 7,834
- Reaction score
- 2
- Points
- 161
I am reading and considering it too StarkArt. For now I am reading the book by Dr Reiter and Adrienne Richards. There are some questions in the book that I feel are good to approach first. Perhaps you have already done that.
Welcome! Great to have you here.
Welcome! Great to have you here.
Yes, I've read the book, and the biofeedback I tried was EEG, and I did have some success with it, in terms of the numbers. I was instructed, by Dr. Margaret Angers, I think her name was, to try to get the theta numbers on each side to match, to have a little a difference as possible. I did start to see some improvement in the six months I had to work with it, but I didn't see any improvement in my seizure activity. I realize that isolated, short amount of experimentation doesn't mean it might not work, but I grew impatient, cost-wise, time-wise, I admit.
As to the Andrews-Reiter program, yes, I've talked to her, and am very excited about what seems to be a dream come true. I read their book years ago and thought it wouldn't pertain to me, as I don't have auras, but now I've ascertained that some people can be trained to recognize their auras in the process, so it sounds very exciting.
I'm just waiting for medical records to be transfered, evaluations of my case to be made, etc., and was hoping to find others who have been involved, to hear their experiences.
THanks for the input, and for being part of this forum, it's very nice to see. I'll be back after Thanksgiving, in the meantime, happy turkey time.
As to the Andrews-Reiter program, yes, I've talked to her, and am very excited about what seems to be a dream come true. I read their book years ago and thought it wouldn't pertain to me, as I don't have auras, but now I've ascertained that some people can be trained to recognize their auras in the process, so it sounds very exciting.
I'm just waiting for medical records to be transfered, evaluations of my case to be made, etc., and was hoping to find others who have been involved, to hear their experiences.
THanks for the input, and for being part of this forum, it's very nice to see. I'll be back after Thanksgiving, in the meantime, happy turkey time.
speber
CWE Muse / Playing With Angels
- Messages
- 1,329
- Reaction score
- 0
- Points
- 0
Welcome Starkart!....
There had been some recent discussion about this on another thread as well called [URL="http://www.coping-with-epilepsy.com/forums/f22/unkindling-behavior-mod-seizure-control-1682/"]"Unkindling," Behavior Mod for Seizure Control [/URL]
Good stuff!
:tup:
There had been some recent discussion about this on another thread as well called [URL="http://www.coping-with-epilepsy.com/forums/f22/unkindling-behavior-mod-seizure-control-1682/"]"Unkindling," Behavior Mod for Seizure Control [/URL]
Good stuff!
:tup:
- Status